Newsletter: Autumn 2021

Dear All

We have had a mixed summer with some parts of the country sweltering and other parts not so much. There appears to be some light at the end of the Covid tunnel with the slow roll out of the vaccine program. We would hope that our older and immune-compromised folk would be vaccinated soon. Last year was a very difficult year for the myeloma community with issues of delayed transplant scheduling and the new era of virtual appointments. I understand that the transplant units are struggling to keep up with demands and are running at full capacity.

The seminar program that we had planned was impacted in 2020, but we managed to have sessions in Whangarei and Hamilton that were well attended. Videos of these sessions will be available to view on our website very soon, so look out for them. We have a provisional plan for an Auckland meeting in April, with the venue to be decided. It is also hoped to arrange a seminar in Palmerston North in late April.

The Facebook private group continues to be well patronised with some lively discussion at times and is a great source of information for all. The numbers are approaching five hundred, which is a great achievement.

I managed to score an interview on the Duncan Garner AM Show in early February and attempted to shine a light on blood cancers, which got very little mention in the latest Cancer Agency report. I also reiterated the message about the widening gap with Australia as regards access to new medicines. Last year Australia gained funding for Daratumamab and also obtained widened access to Lenalidomide in treating the non-transplant eligible group. We will continue to advocate in this area with Pharmac but face significant head-winds because of the current economic situation.

The recent announcement of the Pharmac review was good to finally hear as we were wondering what had happened. There will be an interim report in August and a final report by the end of the year. The terms of reference (TOR) are limited to looking at the process and issues of delay in granting funding but will not comment on the total budget. Many people are unhappy that the TOR are too constrained, as it is only by a significant increase in the budget that the newer and often quite expensive medicines will be funded.

Myeloma New Zealand will continue to advocate on your behalf, and let us hope that some traction can be made in 2021.

Nga mihi,

Ken Romeril